Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants.
To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands.
Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments.
Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases.
While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child.
"Although, according to Freyer (2004), a child older than 10 years has the capacity for EOL decision-making, parents in some cultures prevent children from knowing of their terminal condition in order to protect the child (Liben et al., 2008). In a study conducted in the Netherlands, only 36% of children participated in their EOL decisions (Vrakking et al., 2005). In Asian culture, it is commonly believed that telling patients they are at the EOL is like declaring a death sentence and patients will give up all hope of living (Liben et al.; Sherman, 2006). "
[Show abstract][Hide abstract] ABSTRACT: Purpose
The purpose of this project was to explore the parental experience of making a “do not resuscitate” (DNR) decision for their child who is or was cared for in a pediatric intensive care unit in Taiwan.
A descriptive qualitative study was conducted following parental signing of a standard hospital DNR form on behalf of their critically ill child. Sixteen Taiwanese parents of 11 children aged 1 month to 18 years were interviewed. Interviews were recorded, transcribed, analyzed and sorted into themes by the sole interviewer plus other researchers.
Three major themes were identified: (a) “convincing points to sign”, (b) “feelings immediately after signing”, and (c) “postsigning relief or regret”. Feelings following signing the DNR form were mixed and included “frustration”, “guilt”, and “conflicting hope”. Parents adjusted their attitudes to thoughts such as “I have done my best,” and “the child's life is beyond my control.” Some parents whose child had died before the time of the interview expressed among other things “regret not having enough time to be with and talk to my child”.
Open family visiting hours plus staff sensitivity and communication skills training are needed. To help parents with this difficult signing process, nurses and other professionals in the pediatric intensive care unit need education on initiating the conversation, guiding the parents in expressing their fears, and providing continuing support to parents and children throughout the child's end of life process.
Asian Nursing Research 01/2013; 8(1). DOI:10.1016/j.anr.2013.12.002 · 1.00 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The acute and comprehensive nature of the care provided in the PICU has made it a frequent point of entry into the hospi- tal system and a highly visible contact point for many types of emergency services for children. The circumstances that bring children and their families to the PICU often involve crises that summon the attention of entire families and have ripple effects throughout their communities. Care of the critically ill child therefore has a high impact factor with regard to society at large. Additionally, as a consequence of this important role, the PICU care team may have opportunities to interface with a large number of diverse perspectives and venues. If they are performed skillfully, these interface functions can have a pos- itive impact on the care of children, both within the walls of the PICU and beyond. The goals of this chapter include the enhancement of sen- sitivity, efficiency, and effectiveness in the PICU professional's interactions with the families that they serve. The major fo- cus points are the initial establishment of a working relation- ship,processpointsfordifficultsegmentsofthehospitalcourse, dealing with disability and death, and functions that the PICU practitioner may have in increasing societal awareness of child health and safety.
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